Person Centered Care

Kitwood (1997) first discussed a person-centered approach to care for those with dementia, including recognition of their personhood. Post (1995), Aupperle et al. (2004), and Aminoff and Adunsky (2004) equally suggest that formal and informal caregivers of people with dementia can anticipate best care practices with a person-centered attitude, even at the end of life.

A person-centered approach to formal care at the end of life is described by Magai et al. (2002), who suggest that attention be paid to behavioral and nonverbal communications. Magai et al.'s results indicated that positive affects in patients increased sharply during the first 6 weeks after new communicative interventions occurred in the caregiving groups. There was also a decline in negative affect across time in patients and evidence of decreased stress in caregivers who had received this new training. Similarly, Kutner et al. (2000) reflect on a friendship approach, where regular interpersonal interactions by professionals with people with dementia decreased agitation over time. Haak (2002) concurs that more time spent with people with dementia significantly decreases their agitation.

Although people with dementia in the very late stages generally express little affect and respond primarily through their senses, it has been recognized that some people continue to be expressive in a range of ways that may not be verbal but are clearly communicative (Kitwood, 1997; Fabiano, 2002). A person-centered approach would thus focus on these nonverbal communications.

Increasingly, the literature demonstrates that when care tasks are better understood, training is made available, and outcomes measured, people with dementia are seen to respond favorably. Even their caregivers experience a decrease in stress (Bourgeois, 2002). This finding indicates that consistent positive interpersonal strategies and time spent with people with dementia can be quite valuable.

Grief

The subject of grief emerges in the literature on informal caregiving (Loos & Bowd, 1997; Lindgren et al., 1999; Meuser & Marwit, 2001; Doka, 2002), but curiously, grief is not discussed once from the perspective of a person with dementia. One article reflects on the experience of loss and grief for those living and working in long-term care homes (Keay, 2004), but Hanrahan et al. (2001, p. 116) agree that “there is little provision of grief and bereavement services in these settings.”

Furlini (2001) explores three phases of psychosocial death that emerged from in-depth interviews with three daughters caring for a parent with this illness. The daughters' narratives reveal that their witnessing the deterioration of a parent's mind was a burdensome learning process that encompassed many losses. It was found that these daughters also lacked appropriate education and support.

Sweeting and Gilhooly (1997) examined the extent to which a social death may occur before a biological death among elderly people with dementia. Ratings were made by caregivers who believed their dementing family member was socially “as good as dead,” and that they had discounted the “sufferer” in social terms. However, Sweeting and Gilhooly found that perceiving a sufferer in ways that could be characterized as socially dead was not necessarily combined with behaving as though they were. According to Arehart-Treichel (2004), caregivers in her study transferred their feelings about poor quality of life onto the patients and rated patients' quality of life lower than the patients themselves did. These findings identify the need to directly assess patients' rating of their own quality of life, if this is possible.

Others found that although caregivers reported they were not grieving, there was still a strong sense of loss implicit in their description of their caregiving experience (Sanders & Saltz Corley, 2003). Additionally, for the caregivers who reported that they were grieving, their grief was characterized by multiple losses that accumulated during the disease process.

The related topic of depression has been reviewed in the context of palliative care. Pessin et al. (2002, p. 358) state that “depressed mood and sadness are common, even appropriate responses for patients who are facing a progressive illness that will ultimately lead to their death.” Yet, it appears that depression in the terminally ill is frequently underrecognized and undertreated (Chochinov, 2002). Although it is presumed that clinical depression is an aspect of dementia, the literature found in this search did not reflect sufficiently on possible diagnostic distinctions between expected grief and clinical depression for those dying with dementia.

Agitation and Aggression

It is evident in a review of this literature that aggression increases as the severity of dementia continues and that this remains a central issue for end-of-life care (Eustace et al., 2002). As with depression, aggression is a poorly understood behavior in any population, and both medical and social science research describe its occurrence in a range of populations differently.

O'Malley et al. (2002) state that physical aggression occurs in a majority of patients with dementia. Although their work demonstrates a thorough investigation of how aggression can better be measured and suggestions are made as to how to treat patients based on their aggression scores, little is asked about the activities and environment that surround patients or their experiences and how these might impact their expression of aggression. According to other researchers, better communication strategies and the benefit of strong positive social relationships may decrease agitation and aggression (Small & Gutman, 2002). Zeisel et al. (2003) also found that a caring and supportive environment can diminish aggressive outbursts.

Pain Management

Good palliative care programs have the duty to address evidence of pain, yet there is insufficient clinical evidence regarding pain and suffering in dying dementia patients (Cox & Cook, 2002). Since people do not follow a linear path toward death, pain management can be as variable as there are people living with dementia (Aupperle et al., 2004). This lack of knowledge may lead to inappropriate evaluation and insufficient palliative treatment (Hanrahan et al., 2001).

Cox and Watchman (2004) suggest that there are indications that people with dementia are aware that they are approaching death but that each person has individual and specific experiences in this process. To reduce pain and discomfort, Cox and Watchman suggest that people with dementia require basic pain reduction through prescriptions, they need not to be moved around, and they need calm music and a gentle touch to reduce discomfort as they approach the end of life. Physical and communicative contact with a person dying with dementia is essential to person-centered care (Cox & Cook, 2002).

Decisions regarding oral feeding versus tube feeding in advanced dementia become difficult regarding pain reduction (Kunz, 2003; Mitchell et al., 2003). Aupperle et al. (2004) state that tube feeding is often deleterious, leading to infections, and therefore should not be supported. Aminoff and Adunsky (2004) recommend an approach where aggressive palliative care is the best option: not treating pneumonia and not feeding people with dementia except with water when swallowing becomes difficult or impossible. They state that nurses and physicians need more information about how to decrease pain and possible protracted suffering for those with dementia at the end of life.

Decisions related to prescriptions that may reduce pain likely differ from one physician to another. For this reason, it is important to understand the experience of dementia better and it is essential to better understand individual people's precedent lifestyles so that prescriptions can best support people's thresholds for discomfort and their moral or social values.

Although it is recognized that people with dementia cannot always communicate verbally whether they experience pain, care providers may not be well trained in pain management, they may not consider pain as an issue, and they may act in ways that maintain or increase possible pain. One article was found describing the facial communications of people dying with dementia that may prove helpful in future research on pain management (Jansson et al., 1993). Snow et al. (2005) concur that seeking behavioral signs of pain and changes to behaviors can aid pain assessment by care providers.

Campbell and Guzman (2004) and Aminoff and Adunsky (2004) agree that so little is known about dementia care at the end of life that it is impossible at this time to ensure people will not be subjected to a protracted and potentially uncomfortable death through uninformed care practices. Understanding pain management in this population, and training for the same, has not yet been sufficiently understood.

Care Provision

One of the predominant features of the literature on dementia is the focus on caregivers and their experiences of care provision. In fact, caregiver burden is the most commonly studied topic in clinical gerontology (O'Rourke & Tuokko, 2004). Literature on the burdens associated with caring for someone with dementia occurred so often that this section can only provide a brief overview of the issues.

Gallagher-Thompson and Devries (1994) and Coon et al. (2003) each write about specific strategies that informal caregivers can use to manage their own anger and frustration when responding to a loved one with dementia. These articles refer to activities of self-care such as relaxation, deep breathing, role playing, and developing more assertive behaviors. Farran et al. (2004) reflected on the need to “care for self while caring for others,” providing simple tasks and strategies the caregiver must undertake to alleviate the burdens they experience.

It has been well documented that women are the majority of informal caregivers; thus many of the issues facing informal caregivers are the issues of women, as younger spouses, daughters, or elderly caregivers often with their own health and aging concerns (Grant et al., 2004). Allen (1994) documents that women are more likely to take on the majority of tasks related to caregiving, as well as housekeeping, than male caregivers, who are more likely to have external aid for caregiving and housekeeping duties. Heru et al. (2004) stated that in their study, 63% of caregivers of people with dementia were female, and 61% of the caregivers were spouses of people with dementia. According to Perry (2002), wives giving care to their spouses with dementia are a particularly vulnerable segment of the caregiving population. She suggests this vulnerability is due in great part to views on informal caregiving and socioeconomic barriers that many informal caregivers face.

Thus, although the burdens of individual care providers are well represented in the literature, the research has not focused enough on how broader social forces (e.g., policy and program development or stigma) may contribute toward common burdens, marginalization, or individualization of dementia-related care issues.

Training and Education for Formal and Informal Care Providers

A significant gap identified throughout the literature was the lack of training and education, first, regarding palliative care among a wide range of health care providers, and second, palliative care with a focus on dementia. Lyness (2004) reports that palliative care training during medical school and residency has not been adequate. Strauss and Nelson (1996) concur it is imperative that health care providers acquire better training in palliative or hospice care in order to provide proper assessment of and treatment for people who are dying.

Given this limitation, it is apparent that populations with specific palliative care needs like those dying with dementia have also been neglected in the research. Some issues of acute care at the late stages of dementia may include addressing problems with swallowing, ulcers, pneumonia, dehydration, malnutrition, and urinary tract infections, whereas issues for formal care institutions at an earlier stage may also include disinhibition, wandering, aggression, and binge eating (Hanrahan et al., 2001).

The requirement of the formal care provider at end of life is to understand the nature of the professional care task and to perform it well: how best to feed someone with a swallowing difficulty, how to help someone bathe who may be agitated by water, or how to select appropriate clothes for the day (McGilton, 2004). Many formal care providers are not paid well in palliative care and may not be trained well in care tasks as these relate to someone with dementia (Binstock et al., 1992).

Burnout is a concern. For example, Hellzen et al. (2003) found that nurses with long-standing work experience become less sensitive regarding residents than less experienced nurses. Longevity at work appeared to have a negative effect on their attitudes about people they worked with daily. Goldenberg et al. (2000) state clearly that these formal care providers are essential to a patient's well-being at the end of life. For example, they state that staff is asked to intervene at the late stages of life when new or historic rifts between the patient and the family emerge. He cautions that these rifts, when initiated by the patient, should not be viewed as personal but that care providers understand the nature of the mental health condition. These issues pertain to the informal care provider as well.

The literature search revealed that examples of programs or training regarding palliative care are not well represented in any population, and training regarding specialized care for those with dementia was even less well documented.

Decision Making

There is growing awareness regarding the ethical issues related to decision making at the end of life for people with cognitive impairment, including Down's Syndrome (Cox & Watchman, 2004). The assumption has been that people in the late stages of dementia are unable to actively understand the intent of questions regarding their care and that they are unable to properly be engaged in decisions regarding their own care. However, Wilkinson (2002), Cotrell and Hooker (2005), and Roger (in press) state that more information can be elicited from people with dementia than was previously thought. Given more data on their perspectives, the personal needs of the cognitively impaired should be incorporated into how quality at the end of life is described in care institutions and to formal and informal care providers (Evans, 2002).

Under the doctrine of valid consent and refusal, competent patients have the right to accept or refuse life-sustaining therapies. For incompetent patients, this right may be exercised in partnership with a team and given the recognition of specific domains of decision making (Molloy et al., 1999). It is evident that ethical goals of care should assure that patients' choices are respected and that patients' best interests should be protected (Francis, 2001). These goals may not always recommend the same decisions about care, however, and there is a growing awareness of associated controversies (e.g., when care providers cannot agree).

For example, physicians have the duty to assess the potential benefits and harms of various treatment options and to clearly communicate this information to patients and their proxies in a supportive and truthful manner so best practices can occur (Hertogh et al., 2004). Yet, if family members are uncertain, if there are no family members, or if abuse/neglect has occurred in a family, then controversy may occur. In some cases, formal caregivers must contribute to ethical and appropriate decisions regarding care. To compound these concerns, Post (1995) states that it is important that decisions about end-of-life care not be based on cost-saving criteria.

Advance care plans comprise one solution where an individual can document his or her wishes in advance. These documents are not always well prepared, and, in fact, they appear not to be prepared by the majority of people with dementia (Hong et al., 1996). Dresser (1995) and Post (1995) support the value of “precedent autonomy,” as witnessed through people's preparation of their advance directives while they are still able. On the other hand, Rich (1998) argues that health directives are futile in that the loss of a personal self and decisional capacity undercuts any future value a plan may have (i.e., it is not valid to make decisions for an unknown future self). Ethical discussions in clinical settings reflect on the extent to which people with end-of-life dementia are different people (than before) and should be treated as such in order to retain their prior personalities, desires, and wants (Dresser, 1995; Post, 1995).

According to Allen et al. (2003), residents were more likely to possess advance directives when their proxies possessed advance directives, when their proxies were less religious, and when residents were socially engaged. Miller (2004) found that patients with advance directives had decreased hospital stays and an increased likelihood of dying in a nursing home. He states that patients who died at home had fewer symptoms and less discomfort than those who received care in other settings.

No literature on the role of the public trustee was found in relation to end-of-life issues, advance care plans, and palliative care in this particular population. It is likely that public trustees play an important role in decision making when family is not present at the end of life, and no prior documentation has been found.

Primary Settings of Care

The majority of nursing home residents over age 65 have some level of dementia (Hanrahan et al., 2001). Yet, the research suggests that attention to dementia-related needs may not happen effectively because nursing home residents dying with advanced dementia have not been perceived as having a terminal condition (i.e., dementia was seen as a natural part of aging; Mitchell et al., 2004).

A few examples focused on the value of an appropriate environment for people dying with dementia. It is thought, even in the later stages of dementia when affect and activity are diminished, that suitable environments and proper care can make a difference to observable behaviors in people with dementia. For example, Briller et al. (2001) examined the associations between environmental design features of nursing home special care units and the incidence of aggression, agitation, social withdrawal, depression, and psychotic problems among persons living there who have Alzheimer's disease or a related disorder. A decline of negative behaviors and affect were found, for example, when quiet spaces and more privacy were instituted. Reimer et al. (2004) documented that patients living in specialized units for those with dementia demonstrated improved activity and fewer negative responses.

It is evident from the literature that hospices were not a main topic and people often did not know one existed even when it was situated close to them (Hanrahan et al., 2001). Shega et al. (2003) review one unique Chicago-based program, PEACE, that integrates palliative and geriatric care to include a combination of advance care planning services, setting goals consistent with the stages of dementia, proactive symptom management, caregiver education and support, improved communication skills, and eventually, hospice referral. Shega et al. discuss the significant benefits experienced by those who used these services: Informal caregivers felt that formal carers had been sensitive to their family's feelings and their confidence toward the health care team was strong. This example may become a useful model for future hospice programs for people with dementia.

Spirituality and Dignity

A better understanding of each of the above issues can lead to improved end of life care. By investigating the experiences of people dying with dementia, it may also be possible to provide essential palliative care by addressing spiritual and dignity needs. Chochinov and Breitbart (2000) offer an exemplary volume on end-of-life issues that also addresses the spiritual needs of those at the end of life. Chochinov's (2002) work on dignity may well be applied to this population in the future. Very little other research was found looking at how people dying with dementia may experience dignity at the end of life or how their or their families' spiritual needs may be addressed as part of this end-of-life trajectory.